Thursday, December 10, 2009

From The Archives: "A Sister's Love In Sage Green"

Originally Posted January 2009

The pasta water is boiling over, two of my daughters are deconstructing my family room, my baby is crawling around eating lint and petrified crumbs off the floor, everyone is in various stages of half-nakedness, and I have less than an hour to get the this miniature army dressed, fed, and loaded into the minivan for a 5:30 soccer practice. In the midst of utter chaos, everything comes screeching to a halt when my 4 year old rounds the corner and shouts passionately “Mom! Come quick! Look what CB did!”

She is referring to my 13 year old daughter, the eldest of my small Girl Scout troop. My blue eyed, freckled face girl with lanky limbs and a gawky grace. I long to say her name without the laundry list of disabilities that follows; severe to profound cognitive, social, language, neurological, sensory, and physical delays. Though a teen in years and stature, her developmental age hovers at around 10 to 18 months. Right now, she is Suspect Number One in some type of drama that has just unfolded. There are any number of things that CB could be up to, but there is one in particular I dread more than most.

As I round the corner into our family room, my olfactory senses are already firing neurons to my frazzled brain. My fears are confirmed. CB wears a diaper as she is not toilet trained, and when certain bodily functions take place there is a creative use of brown finger paint of the truly organic variety. I see instantly that both she and her surroundings are covered with the very thing that just hit the fan. At this point, I’m ashamed to admit that I just lose it.

Though my rational, “good parent” side knows I should handle this calmly, my emotional side stages a quick and painless coup and I’m in a tirade, slamming things around, half in tears. I begin to organize the tools I need for hazmat clean up while simultaneously contending with an oblivious and very soiled teenager and a peanut gallery of curious and loud little munchkins. As I’m venting my frustration, screaming at no one and everyone all at once, I slowly become more and more aware of my tiny bystanders. The three malleable psyches who are, on a daily basis, processing what life means growing up with a sister who is “different.” They look toward me as their barometer, their sign post. Right now, I realize, I’m not pointing them in the right direction. This cognition grounds me with an anchor of shame.

Along with the myriad of anxieties about CB’s life, health, and future are the unyielding pressures I feel to minimize any negative impact of her special challenges on my three “typical” children. They will only be blessed by sharing their life with a special sister if they see it that way, and I have been saddled with this responsibility. I know that the examples I set and the lessons I show them through my attitudes and actions are going to help shape their perception of individuals with special needs. Will they see their sister and others like her as a burden on a family and society? An embarrassment? A joy? An inspiration? People with rights and feelings? I’m keenly aware that such attitudes trickle down from me, the parental figure, to these little impressionable minds long before other societal influences are added to the mix.

Of course, I also become protective of CB. I want so much for her sisters to love her, though the severity of her Autism prevents them from seeing any evidence that she is emotionally connected to them at all. I want them to continue a relationship with her after her father and I are gone, chosen by them not because of burden but because of love.

I’m deep in these thoughts while my body is on autopilot; carefully cleaning my teenage daughter as I would a brand new infant. The surge of anger, stress and unjustness are giving way to softer and familiar feelings of compassion, acceptance and the weight of my responsibility. I scan the room for my other children whom I banished. The baby is of course crying hysterically at being trapped in her playpen, and my 2 year old has found a book which is occupying her attention nicely. My 4 year old is deeply engrossed in a drawing at the table.

After everything is cleaned and the sizzling in my brain has stopped, I try to figure out what I’m going to say to my 4 year old, Pink, who has been the most cognizant of the situation. I owe apologies and explanations at varying levels all around. Before I get the chance, Pink looks up from her artistic masterpiece as I approach her. “Mom, can you write something on this for me?” “Sure baby” I say, picking Sage Green out of the crayon box. “This is a card for CB” she says, as I stare at her delicate profile. She dictates and I print in waxy letters: “CB. We still love you really, really much.” Out of the mouths of babes.

It does not matter that I’m at a loss for words because I have a golf ball in my throat. In a few minutes, I’ll hang her homemade card up on the refrigerator where it will remain for years as a reminder, as a promise, as a touchstone. In a few minutes, life will be infused once again with the uncertainty of what the future holds. But, right now, everything is beautiful. Right now, all I need to do is explain to a perplexed little 4 year old why her Mommy is laughing and crying at the same time.


kys said...

You have to be a great mom or you daughter wouldn't be so sweet! Beautiful post!

Leah said...

I undertsand to a degree, A. And I emphasize "to a degree" and ONLY to a degree. Because Daniel, although he so very challenged, can do many things, not the least of which is take himself to the pot, and I am so very thankful for that. As you know, I wish Daniel's father had gotten to this point with me, but he has not and most likely never will now that he has left.

But I do so very much understand that yearning for the "typical" siblings to love the challenged sib. Every single time Olivia does something that demonstrates her affection for her brother, I feel my heart swell. It is such a special emotion.

You are such a gifted writer. I am so glad I found your blog. Your words strengthen me.


Claire said...

I love this post...don't forget to put up "The Missing"...I have that one perpetually in my bookmarks.

Holly (fearless folks) said...

I've felt this way many times, so I understand. I remember being so tired because my daughter (who is on the severe end of autism) that I would be short-tempered with my high functioning son. It's hard, but we have to simply apologize and move on. And remember that we are only human.

Tanya @ TeenAutism said...

Oh, Alicia. I don't know what to say, except that Pink is amazing, just like her mom.

Ekie said...

Don't know if you'd be interested in this, but the website has great clothing for kids/adults with special needs, including a 'lockout suit' designed to foil kids who enjoy undressing themselves a bit too much. Just a thought - and such a sweet story.

Cinda said...

Just when you think you can't take it anymore something/someone reminds us of the tenderness of our lives. The important thing is to listen and some people aren't able to. You do, so beautifully, and share with others. Thank you!

Corrie Howe said...

thanks for re-running this, since I wasn't around in January to read it the first time.

Nancy Campbell said...

This is beautiful writing from a beautiful soul.

Anonymous said...

Tears. I feel like you write my story over and over again. Thank you, Alicia.

Anonymous said...

You write beautifully.

So glad to have found your site.

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